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CT scan, waiting for radiotherapy

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User
Posted 29 Nov 2015 at 19:08

Hello Friends,

on Tuesday the 24th Nov. I went for my CT scan. Quite an experience, but at least I survived it, after a delay of 15 minutes with the patient in front of me.

 

I now need to to wait approximately 6 weeks for the dates of my radiotherapy treatment.  Not sure if I'll be having 4 or 7 weeks of it.

 

Anyways, after the scan, my wife and I spent a lovely hour at the Maggie's Centre ( Swansea ), the staff were friendly and everyone was welcoming. I shall definitely be visiting again, while I have treatment.

 

As for myself,. I'm doing ok.  But I've been referred to Bridgend hospital to have my heart checked out?  Why does everything go wrong at once? Anyway, I've got my head around it, I shall be fine.  First of all, I'll need an angiogram, which is fine, as I had it 2 years ago, when I was diagnosed with heart disease.  I may need 1 or 2 stents, which again I am ok with, my father had this procedure a couple times. But when the GP mentioned the possibility of heart by-pass, that's when I said - WHAT!!  After a couple days I calmed down. Anyway, as they say, crap happens!  It's up to me how I react to such stuff; my way is to keep positive, stiff upper lip etc, and get on with it.

I'm just listening to B.T.O. just now, " You Ain't Seen Nothing Yet ".  Rock on!!  I'm listening to a brilliant internet radio station 2NG Radio.

 

 

Frank.

 

User
Posted 29 Nov 2015 at 21:37

Hello Frank, it sounds like my husband is on the same pathway as yourself,just had first prostrap injection one week ago and due back in February to see consultant about radiotherapy. How have you got on with injections,did you have many side effects, Sorry to hear you have another problem to deal with as well,but you sound very positive,which is good.Like you my husband has quite a lot of urinary problems,also need to stop regularly if travelling which is sometimes difficult.When he had last biopsy he went into retention after and had to have an emergency catheter in for 2 weeks,tht consultant said he might be at risk of needing one during radiotherapy as it causes prostate to swell. Anyway hope all goes well for you,please let us know how you get on.Sofi

User
Posted 30 Nov 2015 at 06:38

hi frank

you need to read some of nikonsteves thread he has been down the heart route also

as for your music have you tried some von hertzen brothers, think you may enjoy them

http://www.vonhertzenbrothers.com/

regards

nidge

 

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 17 Jan 2016 at 19:26

The end of the rainbow's there Frank, it's just sometimes hidden by a little less sunshine.

Your positivity will help and the sunny smile will do the rest.

Good luck with it all.

We can't control the winds - but we can adjust our sails
User
Posted 17 Jan 2016 at 19:46
Frank

I wish you well for your RT. A friend of mine works for Maggies, they are a really good bunch of people and are opening more centres at hospitals around the UK.

You have to believe there is something at the other end of the rainbow, I just wish someone would give me hope by letting me know they actually found it !

let the RT commence

xx

Mo

User
Posted 17 Jan 2016 at 22:46

Hi Frank,
37 sessions is the standard radiotherapy treatment for prostate cancer so no change has been made to do with your heart. You should be fine browsing the internet after your treatment, John had his RT on the way to work each morning. From about half way through, you might feel a bit more fatigue in the afternoons and this can continue for a couple of weeks after it is all finished.
Your skin might get a bit sore round the tummy area, particularly if you are very fair skinned. It feels a bit like sunburn. Did the nurses say anything about using a gentle unscented shower gel rather than the heavily perfumed ones (are you a Lynx man)?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jan 2016 at 23:04

Good luck and Best Wishes Frank

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 07:12

Frank

Good luck with your treatment, I have session 3 of 20 this morning. But you should not be visiting the little boys room after you arrive. After first emptying your bladder you are required to drink 2 or 3 cups of water from around half an hour before so that you have a full bladder for the session.

Despite my worry that the therapy would make my water works issues worse, it seems to be having exactly the opposite effect with good flow, 3 hours between trips in the day and only 3 trips during the night last night. Hope the same happens for you.

Dave

User
Posted 25 Jan 2016 at 07:31
Good luck to those of you going through RT . You'll soon become old hands at what is required of you and the daily procedures you will adapt to.

The 37 sessions soon pass even if seems all embracing and just your normal way of life. And then it will be over.

I found this forum beneficial. Just keep us posted. There's so much help here.

Seek advice whenever you wish.

Many of us have been there.

User
Posted 25 Jan 2016 at 09:35
Hi Frank

Hope all goes well for you today. When I had my RT I met a great bunch of people there for treatment and almost everyone was positive, we shared a lot and the time seemed to go very quickly.

Arthur

User
Posted 27 Jan 2016 at 06:45
Frank, wishing you well for the remainder of your sessions.

I used to ask for the lights to be dimmed during treatment. This was because there was a Perspex panel above the table and when the beam started I could see the reflection of the red light moving across my body. It helped me know how far it had travelled on each of its rotations and how soon it would be over.

A simple thing but it helped.

John

User
Posted 27 Jan 2016 at 08:36

On our machine there is a green line on the ceiling which moves as the equipment rotates, presumably tied up with the laser alignment. But I don't need that to tell me where I am in the process as I can clearly see the head as it moves round me and the buzzing noises each time they fire a shot (they seem to do this in four places rather than the three I was led to believe). Yesterday I asked them to turn down their background music...

Fifth session today. Not sure if I am starting to get the side effects as having some bowel problems - on Monday they had to have me on the table twice as I had some gas inside me and now I am having a mixture of constipation, diarroeha and gas. Used cosmocol (variant of movicol) the last couple of days, not sure if that is a good idea or not.

I usually need a bit of help to get off the table and usually slightly light headed after lying flat on my back for 15-20 minutes.

User
Posted 27 Jan 2016 at 09:35
I was advised by the radiographers to use both normacol and loperamide from an early stage once I'd had a severe upset. It left me dehydrated and delayed my treatment that day as I had to drink extra water.

Tell the radiographers what your experiencing - they'll help you.

Frank,

I know what you mean re the waiting area. Sometimes I was the only patient there and other days the place was heaving.

I can be a chatty person and soon started to talk to others. I soon learnt much about breast cancer !

Luckily I built a rapport with another patient and we got on really well. We still see each other .

The receptionists liked it when we bowled up and soon had them laughing. They said we were the highlight of their days and although pleased for us that we finished a day apart ,told us that they would miss us.

On one occasion we were in a deep conversation about this or that and were told off for not being ready for our respective treatments !

But mostly other patients just sat deep in their own thoughts clutching their cups of water.

User
Posted 30 Jan 2016 at 18:48

Hello Dave,  Hello Surr,

thank you for sharing your experiences.

 

I've completed my first week.  During day 3 ond 4, it turned out that I had 4 bowel movements before reaching hospital. It was almost diarhoea, and caused me a lot of discomfort.  Speaking to the nurses, we agreed to reduce the "mild" laxative to 10ml dose. I think this will help.

Yesterday was a late appointment for 4.30pm, so after being invited to my mother's for supper, my wife and I got home just before 9pm.

During the night last night, I got up 3 times for a wee, and it wasn't very nice.  After I started, the flow stopped and I couldn't carry on. It was difficult to sleep after that but I eventually did.  This morning I returned almost to normal.

On Monday, after treatment, I see the radiologist. Not sure what we'll discuss, but I'll soon find out.

I'm very grateful to the number of people who have kindly offered to drive me to my hospital appointments. I shall make use of them. This past week, my mother and my wife shared the driving.

I am also grateful to the staff in the radiotherapy department, who kindly arranged almost all of my appointments around a 2 hour window at lunch-time.  Also every Wednesday afternoon, there is a group meeting with fellow prostate cancer sufferers, held at the Maggie's Centre within the hospital grounds - a beautiful place, and the members are an inspiration.

 

Frank.

 

 

 

 

User
Posted 09 Feb 2016 at 21:04
Frank,

I had many problems throughout my RT as I've posted before and I think I was the worst patient they had had for some time.

So much so I'm sure the staff groaned when they saw my name come on the list. It was mainly for fluid retention and also for diarrhoea . Wow ,I really do not want to have to go through that again. So I understand what you're going through.

I had to have many bladder scans as the diarrhoea made me dehydrated and I did not have enough fluid for safe RT. Or too much fluid and I had to offload water.

I'm sure it will settle soon and you'll get to grips with it soon and have a good routine.

Keep perservering , it will be worth it in the long term.

The diarrhoea will soon pass once you've finished your treatment .

In the meantime I shall be thinking of you .

It will soon be over.

Best wishes

John

User
Posted 10 Feb 2016 at 09:30

Sorry you have had the runs Fransesco, hope the treatment is going well otherwise.

I was advised early on by the specialist nurse to drop the laxatives (senna and cosmocol) as they definitely made me have diarrhoea. I tried (half heartedly) a low fibre diet but last week she suggested stopping that as well as they would rather have me tending to diarrhoea than constipation. It seem a fine line, too little fibre and you constipate, too much and you go the other way. By tweaking the fibre intake - more bran flakes one day, less the next etc, it seems to be working. Fairly free movements but not diarrhoea. A bit of gas - which I get rid of by sitting on the loo when I change into my gown, making sure I don't pee at the same time....

Just off to session 15 (of 20), looking forward to the last one next week....

Dave

 

User
Posted 08 Mar 2016 at 09:01
Frank,

You're almost there, the end is in sight.

What you're experiencing is quite normal. If you've survived this far then you've been lucky.

I had severe diarrhoea about 3 weeks in and was completely dehydrated as a result.

Loperamide became my best friend alongside normacol. And worked very well for me.

The symptoms abated within 2 weeks of finishing RT.

I was told to eat as normal diet as possible , but to avoid spicy foods , spirits, beer and caffeine. And to drink lots of water.

I was even told to go home and have a glass of wine, but didn't as I'd stopped alcohol by then.

On Christmas Eve though ,the mantra amongst all though was " right lads, remember no Brussel sprouts nor Christmas pud tomorrow ".

I was expecting a far more rigid diet so was pleasantly surprised.

It seems each hospital has differing recommendations .

Hope all goes well for you after RT finishes.

John

User
Posted 09 Mar 2016 at 08:29

The clinic did not really give me any guidelines on diet and the only reason I went on a (semi) low fibre one was because of comments on here when I was having diarrhoea issues. Now 3 weeks after the end the bowels seem very much back to normal. Flow is something else, sometimes good, other times weak and certainly problems with urgency and frequency. Apparently that may take 6 to 8 weeks to stabilise, however I am already going a little less during the night so it does seem to be improving. Back to the oncologist for my post treatment appointment on April 4th with PSA test a few days before that.

Dave

User
Posted 30 Apr 2016 at 06:13
Frank,

Thanks for the news, It seems like you've been busy . I hope that you have good news when you visit the oncologist in a few weeks time.

I know the A40 in Carmarthen quite well, in fact I'm staying 6 miles from Haverfordwest as I write!

Regards,

John

User
Posted 30 Apr 2016 at 10:46
Frank,

I hope you enjoy your time away in Cardiff. Yes, I know about the tiredness , I really thought it would wear off quite soon but it didn't. RT fatigue is quite different to general tiredness. I still am tired from time to time even after a year or so but put it down to the HT. I too rang the specialist nurses ( PCUK ) about 4 months after RT as I was finding life difficult . I'd returned to work on a phased return about 2 months before and everyone there was terrific in the support they gave me. However the nurse told me that what I was experiencing was quite normal and you must initially adapt to a slower lifestyle. Eventually energy levels returned and I've been able to enjoy a more normal way of living since.

John

User
Posted 14 May 2016 at 12:08
Hi Frank,

Amazingly just like last time your post has come in immediately after I've signed in. Coincidence ?

Glad you only have to go as far as Carmarthen for your appointment as opposed to Swansea . I think I'm right in that the oncology services previously at Withybush are no longer available ? It would be far easier for you if you could go to Haverfordwest.

Re tiredness , I still have spells when it hits me. The first part of this week was bad but fortunately my energy levels returned for the latter part, for which I was grateful.

It's a balancing act between keeping active and also not overdoing it. Hopefully you'll find that comfortable medium. I found the first year after RT sometimes very difficult. But in time and with the help of a great family, friends , colleagues and the support of those on this site , I have got through the worst .

Retiring after 7 months after I returned to work has been very beneficial to me. I keep very busy and do not regret changing my life style at all. I have a one day a week gardening job now which I started about 2 months ago. I am determined to keep as positive as I can, fight this disease and enjoy life to the full.

Sorry that you have heart problems as well. My GP was in fact slightly more concerned about my cholesterol levels than she was about by PCa. She's encouraged me to have brisk walks each day and to keep fit. There is significant history of heart disease in my family ( both parents died from it ) and I am now on statins. I am though the first with cancer.

Good luck for your test results next week.

John

User
Posted 15 May 2016 at 09:34

Hello John,

thanks for your reply.

I have a diabetic nurse, who keeps banging on about brisk walking - well, it isn't going to happen at the moment. I have my diabetic MOT in about a month's time, so we'll soon discover what shape I'm in. I'll be very interested in how my diabetes is coming on, especially after prostate cancer. Anyway, as I was on a low fibre diet during my radiotherapy, my diabetes was pushed to the back of the queue as Obama would say! :D I'm not too worried about it, as I've been told for the past 4 years that my control is good; my cholesterol seems to worry my medical team, as does my blood pressure.

I don't know if Haverfordwest had an oncology service. It seems that our local health board wants to squeeze the life out of our hospital and leave us with no services at all! It's a huge chunk of a building, that surely needs to be run at full capacity. The hospital at Carmarthen seems to be at full stretch. How the NHS works makes no sense to me.

So tomorrow I go to find out the result of my latest blood test - good or bad!  I suppose I will need to begin a new thread, what I'll call it I don't know.

 

 

Frank.

 

 

User
Posted 22 May 2016 at 12:40

Frank, goood news that your PSA is down to 0.01 that is officially undetectable and in a very good place, the same score as mine as it happens (sorry John to mention 0.01 again).

As for the constant tiredness you will have to live with it for a it but my way of dealing with it is to switch on the motivation button in my brain box and knuckle down, make the effort and go for it, once I have started doing something it roller coasts along and all of a sudden I have done what I set out to do. I am still knackered but what a sense of achievement as I nod off to sleep satisfied with my job done!

Stay positive and give it a go.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 May 2016 at 13:24

Old Al (who was actually only in his early 50s) was practically trapped in a wheelchair until he took up swimming - he found over a period of time that this overcame the fatigue and he was able to walk again. You can probably find some of his posts using the search function.

Also, I can't remember whether you have tried the PCUK fatigue programme? Devonmaid knows more about that than I do but reported that it helped John.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 May 2016 at 13:41

Reading all the different experiences of EBRT it seems reactions are really individual. On the tiredness issue I am definitely getting this but naps help. I also try to do jobs in bite size pieces - no more than 30 minutes, say, in the garden. It certainly does help to keep as active as you can whilst not beating yourself up about not being able to do as much.

Edited by member 22 May 2016 at 13:42  | Reason: Not specified

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User
Posted 29 Nov 2015 at 21:37

Hello Frank, it sounds like my husband is on the same pathway as yourself,just had first prostrap injection one week ago and due back in February to see consultant about radiotherapy. How have you got on with injections,did you have many side effects, Sorry to hear you have another problem to deal with as well,but you sound very positive,which is good.Like you my husband has quite a lot of urinary problems,also need to stop regularly if travelling which is sometimes difficult.When he had last biopsy he went into retention after and had to have an emergency catheter in for 2 weeks,tht consultant said he might be at risk of needing one during radiotherapy as it causes prostate to swell. Anyway hope all goes well for you,please let us know how you get on.Sofi

User
Posted 30 Nov 2015 at 06:38

hi frank

you need to read some of nikonsteves thread he has been down the heart route also

as for your music have you tried some von hertzen brothers, think you may enjoy them

http://www.vonhertzenbrothers.com/

regards

nidge

 

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 03 Dec 2015 at 09:21

Hello Bladerunner,

I had a look at that link you posted.  A very interesting band!  I saw the video for their song Sunday Child - beautiful!

 

 

Right, until 4pm yesterday, I was doing fine.  After postman came, I had a letter to go to Bridgend for a pre-assessment before an angiogram.

I made a couple phone calls to my oncologist's secretary, so she ask her what my options were.  The oncologist phoned me around 4pm, and in her opinion, my radiotherapy can be delayed, while I go and have my heart treated, at present I don't know how.  I asked how was my prostate, she replied that the CT scan last week, was for planning purposes only. But she must know something, as she told me not to worry, not to panic, as my cancer will not kill me!  Ok, a bit of good news, I suppose.

Now, all I need to do is go to my cardiac appointment and see what they'll offer me.  My GP mentioned stents and possibly a heart by-pass.  All lovely I'm sure, I wrongly assumed that my cancer treatment would be priority.  Isn't it amazing how quickly a situation can change?

Never mind, it's off to work I goes, I try to push this stuff to the back of my mind.  Some good news this morning - Liverpool FC are in the League Cup semi-finals!!!

 

 

Frank.

 

 

User
Posted 03 Dec 2015 at 10:27

Good Morning,

My husband has locally advanced PC, Gleason score 9. Yesterday he had his catheter removed after about 6 weeks, as his prostate was so swollen after the biopsy. initially he was able to pee with glee, but subsequently he has found it more difficult. He has no pain, and feels great that the catheter is out. He is not in retention, just very slow. He has been in retention three times before, and he is worried this may be the start of it again. Any advice would be great. He is due to have a scan in January to ascertain how much his tumour has shrunk after three months ADT, then he can certain with the consultant what to do next... any advice or thoughts would be greatly received. Thanks

 

Leila.

User
Posted 03 Dec 2015 at 10:45

Leila it might be better to repost this separately so that more people see it.

Does/has your husband been given Tamsulosin at any time?

A trip to the GP might be in order so that he can assess exactly what is causing the slowness, especially as he needs reassurance regarding a possible retention.

I personally wouldn't leave anything until January. You need to have this sorted asap and certainly before everything goes on a Christmas go-slow

We can't control the winds - but we can adjust our sails
User
Posted 03 Dec 2015 at 10:48

Francesco, the consultant is the expert (at last I hope so !!) and since she feels the heart is more important then that's surely what you have to go by.

 

I expect Steve will be along at some stage since he's the one who's had stents. Hopefully he can reassure you

We can't control the winds - but we can adjust our sails
User
Posted 03 Dec 2015 at 11:45

Hi, Thanks for the advice, where do you suggest I post, as i'm quite new to this community.

Any support and help is gratefully received.

 

Leila 

User
Posted 03 Dec 2015 at 12:55

This section should be fine Leila. Just start a new conversation with your own heading and then people can reply direct to you. I'm just thinking that some people might not see it if they aren't following all conversations

We can't control the winds - but we can adjust our sails
User
Posted 03 Dec 2015 at 13:49

Ahh Thanks for the advice. We are struggling a bit, he had a late diagnosis ( three years) and we  have decided to self fund. The consultant is over three hours drive away. We are using our GP but we are a bit hesitant to trust them due to their poor diagnosis. 

We decided not to complain, but try to work with them to improve standards of communication and practice. My husband had his catheter removed yesterday after 6 weeks post biopsy. He has been in retention on three occasions and is a bit worried. He was able to pee wonderfully last evening, but today he seems to be having more difficulty. Any advice please. He is scared to drink too much in case he goes into retention again.  Thanks Leila. 

User
Posted 03 Dec 2015 at 14:11

It is self defeating to drink less Leila - he should be drinking plenty to keep the system flushed through. It does sound like he may be going that way again though so at the first sign of retention you need to be ready for a jaunt to A&E I am afraid. Don't leave it until he is in pain

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Dec 2015 at 14:31

Thanks Lyn, Thats my feelings too. i think he's scared in case it happens again. I am standing by for a trip over the mountains to A&E if needed.

 

Leila 

User
Posted 04 Dec 2015 at 11:15

Good news, no trips to A&E required, services have been resumed.

User
Posted 17 Jan 2016 at 12:04

Hello Friends,

I'm able to post now!  I ticked the 'follow conversation' before I attempted to post.

 

Ok, Friday morning, I had an appointment letter to go and begin radiotherapy treatment on Monday 25th January.  My hands were shaking, as I wasn't expecting such a quick response from the radiology department, especially as I had an angiogram about a month ago.  I had the same result as 2 years ago, so no further treatment required.  Only for 2 new tablets to add to my prescription list - fantastic! :(  I now take 28 tablets daily.

I shall need 37 sessions of treatment, I'm assuming because of my heart disease.

So here we are, on the road, looking for the end of the rainbow!  :)  I shall keep positive and smiling, I've waited a while to get this far, and I trust the NHS shall look after me as it always has done.  After I've had the treatment, I shall visit the Maggie's Centre, on the site of the hospital - Swansea.  I visited once before, after my initial CT scan, and it's truly a welcoming place.

 

Frank.

 

 

 

User
Posted 17 Jan 2016 at 19:26

The end of the rainbow's there Frank, it's just sometimes hidden by a little less sunshine.

Your positivity will help and the sunny smile will do the rest.

Good luck with it all.

We can't control the winds - but we can adjust our sails
User
Posted 17 Jan 2016 at 19:46
Frank

I wish you well for your RT. A friend of mine works for Maggies, they are a really good bunch of people and are opening more centres at hospitals around the UK.

You have to believe there is something at the other end of the rainbow, I just wish someone would give me hope by letting me know they actually found it !

let the RT commence

xx

Mo

User
Posted 17 Jan 2016 at 21:22

Hello Johsan,  hello Edamo,

thank you for your replies, I appreciate it.  As a matter of fact, I could probably do with a break from work - even though it's only part-time!

An acquaintance of mine, who is a friend on facebook, received his all clear during 2015.  So he has found the end of the rainbow - I wish him well!

Tonight I begin my favourite drink - mild laxative! :D  Talking with a nurse from the radiotherapy department on Friday afternoon, I informed her that I shall only be taking 15ml every night.  Before my CT scan I was taking 30ml and it was horrible!  Having prostate cancer has resulted in my having to stop for a wee, 3 or 4 times before getting to hospital, which is about 70 miles away.  Having to contend with the possibility of needing an urgent visit for a mysterious movement, is out of the question, pal!!  That simply will not do!  the friendly staff I spoke to on that occasion, really gave me good advice.  I stopped the laxative for 2 nights.  The night before the CT scan, I took 15ml. Lovely!

 

Of course, how I will be feeling when I return home after treatment, will determine how often I shall be able to visit the forum.

 

 

Frank.

 

 

 

User
Posted 17 Jan 2016 at 22:46

Hi Frank,
37 sessions is the standard radiotherapy treatment for prostate cancer so no change has been made to do with your heart. You should be fine browsing the internet after your treatment, John had his RT on the way to work each morning. From about half way through, you might feel a bit more fatigue in the afternoons and this can continue for a couple of weeks after it is all finished.
Your skin might get a bit sore round the tummy area, particularly if you are very fair skinned. It feels a bit like sunburn. Did the nurses say anything about using a gentle unscented shower gel rather than the heavily perfumed ones (are you a Lynx man)?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2016 at 09:31

Hello Lyn, 

               thank you so much for your reply.

Yes, I'm a Lynx man, I like the Africa gel, although I'm as white as a softee ice-cream! :D

I forgot about using a gentler washing gel, but I shall do so.

 

When I first saw my oncologist, it was suggested I only needed 4 weeks treatment.  So I am assuming it is because of my recent heart examination and tests, that I require the lower dose that 37 sessions would give me.  I'll probably know more after my first treatment, next Monday afternoon.

 

Frank.

 

 

User
Posted 24 Jan 2016 at 22:20

Well friends,

                    I'm thinking about an early night, so I can get a reasonable amount of sleep.  Tomorrow my wife and I start our trip about 10am.

I need to be there for 1pm, so I'm giving myself enough time, as I'll probably need the little boys room 2 or 3 times.

 

Went to the GP twice this past week, to review my medication and I asked for my blood pressure to be checked.  I wasn't given the result on Wednesday, the doctor thought it was rather on the high side, could I return on Friday morning? Of course.

On Friday morning, my blood pressure was worse  -  175 / 98!!  Doctor told me to phone the hospital to tell them.  Phone the radiotherapy department, and I spoke to a nice nurse, who asked that I keep the appointment, and that they would look after me.

 

So tomorrow is appointment number 1, with 36 to follow!

 

 

Frank.

 

User
Posted 24 Jan 2016 at 23:04

Good luck and Best Wishes Frank

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 07:12

Frank

Good luck with your treatment, I have session 3 of 20 this morning. But you should not be visiting the little boys room after you arrive. After first emptying your bladder you are required to drink 2 or 3 cups of water from around half an hour before so that you have a full bladder for the session.

Despite my worry that the therapy would make my water works issues worse, it seems to be having exactly the opposite effect with good flow, 3 hours between trips in the day and only 3 trips during the night last night. Hope the same happens for you.

Dave

User
Posted 25 Jan 2016 at 07:31
Good luck to those of you going through RT . You'll soon become old hands at what is required of you and the daily procedures you will adapt to.

The 37 sessions soon pass even if seems all embracing and just your normal way of life. And then it will be over.

I found this forum beneficial. Just keep us posted. There's so much help here.

Seek advice whenever you wish.

Many of us have been there.

User
Posted 25 Jan 2016 at 09:35
Hi Frank

Hope all goes well for you today. When I had my RT I met a great bunch of people there for treatment and almost everyone was positive, we shared a lot and the time seemed to go very quickly.

Arthur

User
Posted 26 Jan 2016 at 21:37

Hello Arthur,

today was my second session, a little easier than my first one.

Let me explain. I was asked to arrive by 1pm, my wife and I arrived at 12.30pm.  I wasn't called until 1.50pm!  THen I was taken to a room which, it turned out, had a radiotherapy simulator.  I thought it was the actual treatment, but was told otherwise. So I had to lie down flat on this narrow rock-solid bench. It turned out I was there for almost 45 minutes according to my wife. Well it was extremely unpleasant, as amongst other things, I suffer with my back and my spine has scoliosis. It was most uncomfortable, but at least I don't have to do this again!

Just over an hour later, I went into the waiting room, to wait for the radiotherapy. I had to drink 3 cups of water then wait 40-45 minutes to be called for treatment.  Also in my case, I DO need the boys room before I drink the water.  The treatment today wasn't too bad, I just concentrated on the noises the machine was making!  As yesterday, after the treatment, it was difficult to get off the table, the nurse kindly helped me.

So tomorrow, I shall repeat all the joys that I experienced today!  So far, in the RT waiting room, all the other people keep themselves to themselves, and looking unhappy.  It appears I'm the only laughing boy there! :D  Well, at least I can read the paper, helping the 45 minutes to pass.

 

Frank.

PS  Tomorrow afternoon, I hope to join a group of fellows at the Maggie's Centre, for some good old prostate chat!

 

 

Edited by member 26 Jan 2016 at 21:38  | Reason: Not specified

User
Posted 27 Jan 2016 at 06:45
Frank, wishing you well for the remainder of your sessions.

I used to ask for the lights to be dimmed during treatment. This was because there was a Perspex panel above the table and when the beam started I could see the reflection of the red light moving across my body. It helped me know how far it had travelled on each of its rotations and how soon it would be over.

A simple thing but it helped.

John

User
Posted 27 Jan 2016 at 08:36

On our machine there is a green line on the ceiling which moves as the equipment rotates, presumably tied up with the laser alignment. But I don't need that to tell me where I am in the process as I can clearly see the head as it moves round me and the buzzing noises each time they fire a shot (they seem to do this in four places rather than the three I was led to believe). Yesterday I asked them to turn down their background music...

Fifth session today. Not sure if I am starting to get the side effects as having some bowel problems - on Monday they had to have me on the table twice as I had some gas inside me and now I am having a mixture of constipation, diarroeha and gas. Used cosmocol (variant of movicol) the last couple of days, not sure if that is a good idea or not.

I usually need a bit of help to get off the table and usually slightly light headed after lying flat on my back for 15-20 minutes.

User
Posted 27 Jan 2016 at 09:35
I was advised by the radiographers to use both normacol and loperamide from an early stage once I'd had a severe upset. It left me dehydrated and delayed my treatment that day as I had to drink extra water.

Tell the radiographers what your experiencing - they'll help you.

Frank,

I know what you mean re the waiting area. Sometimes I was the only patient there and other days the place was heaving.

I can be a chatty person and soon started to talk to others. I soon learnt much about breast cancer !

Luckily I built a rapport with another patient and we got on really well. We still see each other .

The receptionists liked it when we bowled up and soon had them laughing. They said we were the highlight of their days and although pleased for us that we finished a day apart ,told us that they would miss us.

On one occasion we were in a deep conversation about this or that and were told off for not being ready for our respective treatments !

But mostly other patients just sat deep in their own thoughts clutching their cups of water.

User
Posted 30 Jan 2016 at 18:48

Hello Dave,  Hello Surr,

thank you for sharing your experiences.

 

I've completed my first week.  During day 3 ond 4, it turned out that I had 4 bowel movements before reaching hospital. It was almost diarhoea, and caused me a lot of discomfort.  Speaking to the nurses, we agreed to reduce the "mild" laxative to 10ml dose. I think this will help.

Yesterday was a late appointment for 4.30pm, so after being invited to my mother's for supper, my wife and I got home just before 9pm.

During the night last night, I got up 3 times for a wee, and it wasn't very nice.  After I started, the flow stopped and I couldn't carry on. It was difficult to sleep after that but I eventually did.  This morning I returned almost to normal.

On Monday, after treatment, I see the radiologist. Not sure what we'll discuss, but I'll soon find out.

I'm very grateful to the number of people who have kindly offered to drive me to my hospital appointments. I shall make use of them. This past week, my mother and my wife shared the driving.

I am also grateful to the staff in the radiotherapy department, who kindly arranged almost all of my appointments around a 2 hour window at lunch-time.  Also every Wednesday afternoon, there is a group meeting with fellow prostate cancer sufferers, held at the Maggie's Centre within the hospital grounds - a beautiful place, and the members are an inspiration.

 

Frank.

 

 

 

 

User
Posted 09 Feb 2016 at 18:51

Hello Friends,  it's been a while, but past few days has been interesting!

Friday of last week, in the morning, I had a tough time with diarheoa - frightening.  After 2 normal bowel movements after getting up, I had 3 or 4 bouts of diarheoa, which was awful and frightened the life out of me. On that day 2 of my nephews were driving me to hospital for treatment, and I wasn't looking forward to it. It seemed my worst nightmare was coming true.  I had read about it as a side effect and there I was!

I actually phoned to tell the hospital that I wasn't going!  My wife said I had to go, as I'd promised a colleague who lives nearby, to have a lift home!  The lady on the phone said she'd get a nurse to phone back in 15 minutes. In fact the nurse phoned my wife just over an hour later, while we were on the road. I managed to travel to each of my toilet stops, half an hour apart.

Got to the hospital and had treatment, the radiologist told me to stop taking the laxative.  I managed to get home ok, including 2 toilet stops. My weekend turned out good. Saturday I did 1 bowel movement, and Sunday I had 3 during the course of the day. I stopped taking the laxative.

So yesterday ( Monday ), started well enough, I had 3 bowel movements before breakfast.  After breakfast, I had another 5 bowel movements which were horrendous diarheoa - wow, it was awful and I was in panic mode.  I phoned the the hospital to say I don't think I can make treatment, but they said, they would like it if I could! Oh, I forgot to say, that I took Immodium on 4 occasions, but it took a while to work.

Again the lady said they would phone back.  I told my wife I'll wait until they do - no way could I travel in the state I was.  The phone call came after 80 minutes or so.  By then I had settled down, and eventually, my wife and I went travelling towards the M4.

Got to hospital and signed in, and waited to speak to the radiologist.  She was very good and explained that the radiotherapy could be causing my nasty side effect as it does happen.  By the time we were going home, my body had settled down.

Today I went for treatment as normal, but I was a little nervous, as so far today I haven't had any bowel movement - I should think I had a good clearout yesterday!

So this is my latest experience. I've had 2 and a half weeks, with 5 more weeks to go - absolutely marvellous!  Has any other member had this problem?  And how long may it last?  I most definitely did NOT sign up for all this nonsense, folks!

 

Frank.

 

 

 

 

 

Edited by member 09 Feb 2016 at 18:53  | Reason: Not specified

User
Posted 09 Feb 2016 at 21:04
Frank,

I had many problems throughout my RT as I've posted before and I think I was the worst patient they had had for some time.

So much so I'm sure the staff groaned when they saw my name come on the list. It was mainly for fluid retention and also for diarrhoea . Wow ,I really do not want to have to go through that again. So I understand what you're going through.

I had to have many bladder scans as the diarrhoea made me dehydrated and I did not have enough fluid for safe RT. Or too much fluid and I had to offload water.

I'm sure it will settle soon and you'll get to grips with it soon and have a good routine.

Keep perservering , it will be worth it in the long term.

The diarrhoea will soon pass once you've finished your treatment .

In the meantime I shall be thinking of you .

It will soon be over.

Best wishes

John

User
Posted 10 Feb 2016 at 09:30

Sorry you have had the runs Fransesco, hope the treatment is going well otherwise.

I was advised early on by the specialist nurse to drop the laxatives (senna and cosmocol) as they definitely made me have diarrhoea. I tried (half heartedly) a low fibre diet but last week she suggested stopping that as well as they would rather have me tending to diarrhoea than constipation. It seem a fine line, too little fibre and you constipate, too much and you go the other way. By tweaking the fibre intake - more bran flakes one day, less the next etc, it seems to be working. Fairly free movements but not diarrhoea. A bit of gas - which I get rid of by sitting on the loo when I change into my gown, making sure I don't pee at the same time....

Just off to session 15 (of 20), looking forward to the last one next week....

Dave

 

User
Posted 08 Mar 2016 at 08:36

Hello Friends,

I'm afraid I don't visit very often.  I'm on week 7 of my radiotherapy treatment.  Next week I have 3 days and I finish on 16th of March.

For past few weeks, I've had diarrhoea about once a week.  Sunday just gone and yesterday, I had it 2 days in a row! I had to phone the hospital, to explain I would be an hour late. That was ok by them, just as long as I turn up.

I read your post Dave. How come a low fibre diet gave you constipation? I would have thought a high fibre would give you that?

 

I was on youtube the other night and came across a video from Kent Oncology. They advise their patients to eat a high fibre diet. My radiotherapy team advised me to eat a low fibre diet. So who is right and who is wrong? Apart from a touch of diarrhoea, I've been fine with my treatment.

On Wednesday this week ( tomorrow ), I see my oncologist. What she will have to say, I simply don't know.  One question I'll be asking her, is how do I go about resuming my normal diet. I'll let you know what she says.

 

 

Frank.

 

User
Posted 08 Mar 2016 at 08:47

Hi Frank,

They are both right, ordinarilly we should all eat a high fibre diet, lots of fruit and vegetables, the '5 a day' etc.

However, when you are actually having radiotherapy, particularly external beam RT, you should switch to a low fibre diet for a few weeks to counteract the effect of the radiation on your bowels.

My hospital gave me a diet sheet, no fruit, no greens, no salad, no brown bread, brown rice, or beans.

The recommended boiled potatoes and rice, chicken or fish and specifically Jaffa Cakes!

It worked for me.

:)

Dave

User
Posted 08 Mar 2016 at 09:01
Frank,

You're almost there, the end is in sight.

What you're experiencing is quite normal. If you've survived this far then you've been lucky.

I had severe diarrhoea about 3 weeks in and was completely dehydrated as a result.

Loperamide became my best friend alongside normacol. And worked very well for me.

The symptoms abated within 2 weeks of finishing RT.

I was told to eat as normal diet as possible , but to avoid spicy foods , spirits, beer and caffeine. And to drink lots of water.

I was even told to go home and have a glass of wine, but didn't as I'd stopped alcohol by then.

On Christmas Eve though ,the mantra amongst all though was " right lads, remember no Brussel sprouts nor Christmas pud tomorrow ".

I was expecting a far more rigid diet so was pleasantly surprised.

It seems each hospital has differing recommendations .

Hope all goes well for you after RT finishes.

John

User
Posted 09 Mar 2016 at 08:29

The clinic did not really give me any guidelines on diet and the only reason I went on a (semi) low fibre one was because of comments on here when I was having diarrhoea issues. Now 3 weeks after the end the bowels seem very much back to normal. Flow is something else, sometimes good, other times weak and certainly problems with urgency and frequency. Apparently that may take 6 to 8 weeks to stabilise, however I am already going a little less during the night so it does seem to be improving. Back to the oncologist for my post treatment appointment on April 4th with PSA test a few days before that.

Dave

User
Posted 28 Apr 2016 at 20:12

Hello John, hello Dave,

                                   I apologise for my late reply.  My wife and I have been busy with " stuff ", since my last radiotherapy appointment on April 16th.  On Monday, April 14th, my wife and I were rear-ended by a Frenchman, in an old Mitsubishi Pajero pickup truck.  We were waiting at a roundabout in Carmarthen to continue on the A40 towards Haverfordwest - we were less than 40 miles from home! The Frenchman rammed the back of our Skoda Estate causing lots of damage; the rear tailgate and rear bumper needed replacing. It was quite a bump. I'm surprised I didn't end up with an injured back.

Besides all this, I've been busy catching up with re-arranged appointments for dentist, optician and even a heart-scan, which turned out ok. Even this afternoon, I've been for a chest X-ray.

Then I'm busy with visiting family members, visiting my GP several times. And looking after grandchildren, which was lovely but tiring.

As for my side-effects after treatment, my diarheoa symptoms seem to have disappeared, thank the Lord! I still visit the toilet quite often. In past 2 weeks, my night-time visits seem to have settled down to 2 or 3 times. Best of all, It's good to be able to enjoy a normal diet again. I haven't gone crazy, including a varied diet slowly.

Being diabetic, I've applied for a 6 week course run by the Expert patient programme, to learn more about healthy eating for diabetics. Since returning home, I've been feeling quite tired, daily and also feeling perishing cold. I hate the current cold weather with arctic winds. THerefore I haven't felt motivated to go and do as much walking as I would like.  Not that I can walk far.  I don't know if I could walk 1 mile at present!

About 3 more more weeks, before I go and see the oncologist for my follow up appointment. I hope it goes well.

 

Frank.

 

 

 

User
Posted 30 Apr 2016 at 06:13
Frank,

Thanks for the news, It seems like you've been busy . I hope that you have good news when you visit the oncologist in a few weeks time.

I know the A40 in Carmarthen quite well, in fact I'm staying 6 miles from Haverfordwest as I write!

Regards,

John

User
Posted 30 Apr 2016 at 09:11

Hello John,

                thanks for the reply.

These last couple days I've been feeling extremely tired and just wanting to sleep.  I phoned my cancer lady from Pembrokeshire Cancer Support, who explained that I could have after effects following radiotherapy, for many months. That sounds like fun, but at least we're approaching the right time of year, so I'll be able to get out more.

Tomorrow, my wife and I go to Cardiff to stay with my son and his family for 1 night. This will be my first long trip since my treatments at Swansea.  I haven't been to Cardiff since the autumn, as with my symptoms, I simply didn't want to travel. It will be nice to see our grandson. I find that Cardiff is generally 2 degrees warmer than Pembrokeshire. We come home for Monday night.

 

 

Frank.

 

 

User
Posted 30 Apr 2016 at 10:46
Frank,

I hope you enjoy your time away in Cardiff. Yes, I know about the tiredness , I really thought it would wear off quite soon but it didn't. RT fatigue is quite different to general tiredness. I still am tired from time to time even after a year or so but put it down to the HT. I too rang the specialist nurses ( PCUK ) about 4 months after RT as I was finding life difficult . I'd returned to work on a phased return about 2 months before and everyone there was terrific in the support they gave me. However the nurse told me that what I was experiencing was quite normal and you must initially adapt to a slower lifestyle. Eventually energy levels returned and I've been able to enjoy a more normal way of living since.

John

User
Posted 14 May 2016 at 11:34

Hello John,

After my radiotherapy, I decided to give up my part-time job at my brother's petrol station. Anyways, for past couple years, I was only doing light work and computer duties, as over 2 years ago I was diagnosed with heart disease. So my life is a bundle of laughs!

 

Thursday morning, I had my PSA blood test, for which I hope to get the result, when I see the oncologist at Carmarthen on Monday coming.

I saw my cancer support lady on Tuesday afternoon. She kindly did a home visit, which was very nice. She gave a booklet on fatigue, and she said that I would probably have this for about a year! I was told not to over-do my walking exercise, although I can't walk far at present.

But the nurse I saw, who is also my diabetic nurse, says I need to to do more!  Well, I'll just do what I can. One day I spent too much around town, doing shopping. I over did things. The following day I paid for it, as I didn't move from the sofa.

 

Frank.

 

 

User
Posted 14 May 2016 at 12:08
Hi Frank,

Amazingly just like last time your post has come in immediately after I've signed in. Coincidence ?

Glad you only have to go as far as Carmarthen for your appointment as opposed to Swansea . I think I'm right in that the oncology services previously at Withybush are no longer available ? It would be far easier for you if you could go to Haverfordwest.

Re tiredness , I still have spells when it hits me. The first part of this week was bad but fortunately my energy levels returned for the latter part, for which I was grateful.

It's a balancing act between keeping active and also not overdoing it. Hopefully you'll find that comfortable medium. I found the first year after RT sometimes very difficult. But in time and with the help of a great family, friends , colleagues and the support of those on this site , I have got through the worst .

Retiring after 7 months after I returned to work has been very beneficial to me. I keep very busy and do not regret changing my life style at all. I have a one day a week gardening job now which I started about 2 months ago. I am determined to keep as positive as I can, fight this disease and enjoy life to the full.

Sorry that you have heart problems as well. My GP was in fact slightly more concerned about my cholesterol levels than she was about by PCa. She's encouraged me to have brisk walks each day and to keep fit. There is significant history of heart disease in my family ( both parents died from it ) and I am now on statins. I am though the first with cancer.

Good luck for your test results next week.

John

User
Posted 15 May 2016 at 09:34

Hello John,

thanks for your reply.

I have a diabetic nurse, who keeps banging on about brisk walking - well, it isn't going to happen at the moment. I have my diabetic MOT in about a month's time, so we'll soon discover what shape I'm in. I'll be very interested in how my diabetes is coming on, especially after prostate cancer. Anyway, as I was on a low fibre diet during my radiotherapy, my diabetes was pushed to the back of the queue as Obama would say! :D I'm not too worried about it, as I've been told for the past 4 years that my control is good; my cholesterol seems to worry my medical team, as does my blood pressure.

I don't know if Haverfordwest had an oncology service. It seems that our local health board wants to squeeze the life out of our hospital and leave us with no services at all! It's a huge chunk of a building, that surely needs to be run at full capacity. The hospital at Carmarthen seems to be at full stretch. How the NHS works makes no sense to me.

So tomorrow I go to find out the result of my latest blood test - good or bad!  I suppose I will need to begin a new thread, what I'll call it I don't know.

 

 

Frank.

 

 

User
Posted 22 May 2016 at 11:54

Monday lunchtime, I went to see the oncologist to hear the result of my blood test. DR.Phan wasn't there, so I saw 1 of her colleagues.  The bottom line is that my PSA level is below 0.01, which I'm assuming is very good. Of course I wasn't told if I'm cured as it's too soon to tell. My PSA will be checked again during September, so I'm looking forward to that.

Otherwise, I'm still suffering from fatigue, I simply don't want to do anything. I know it's wrong but I just can't motivate myself.  Next month I go for my diabetic MOT, so I'm assuming my nurse shall have words with me then. Even though the sun is shining, I still feel the chill in the air.  We've just been to the local shop with our granddaughter, and I was glad to get back home.

 

 

Frank.

User
Posted 22 May 2016 at 12:40

Frank, goood news that your PSA is down to 0.01 that is officially undetectable and in a very good place, the same score as mine as it happens (sorry John to mention 0.01 again).

As for the constant tiredness you will have to live with it for a it but my way of dealing with it is to switch on the motivation button in my brain box and knuckle down, make the effort and go for it, once I have started doing something it roller coasts along and all of a sudden I have done what I set out to do. I am still knackered but what a sense of achievement as I nod off to sleep satisfied with my job done!

Stay positive and give it a go.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 May 2016 at 13:24

Old Al (who was actually only in his early 50s) was practically trapped in a wheelchair until he took up swimming - he found over a period of time that this overcame the fatigue and he was able to walk again. You can probably find some of his posts using the search function.

Also, I can't remember whether you have tried the PCUK fatigue programme? Devonmaid knows more about that than I do but reported that it helped John.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 May 2016 at 13:41

Reading all the different experiences of EBRT it seems reactions are really individual. On the tiredness issue I am definitely getting this but naps help. I also try to do jobs in bite size pieces - no more than 30 minutes, say, in the garden. It certainly does help to keep as active as you can whilst not beating yourself up about not being able to do as much.

Edited by member 22 May 2016 at 13:42  | Reason: Not specified

User
Posted 22 May 2016 at 14:08

I don't think it is the RT that causes so many problems - for most men with extreme fatigue, it is the hormones

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 May 2016 at 17:08
Great news Frank, I'm really pleased for you.

Re fatigue, just do what you can and leave what you can't . Plan how you approach doing anything. But try to keep active each day at some point. It will become easier with time. I'm still tired from time to time but don't worry so much about it now.

And the inevitable reply to Mr Puffingbilly. - I'm doing what I can mate , it's my body letting me down ! And what's wrong with a 0.2 score anyway? I might aim for a hat trick of 0.2s ! Find out in 2 months time .

John

User
Posted 23 May 2016 at 14:25

Hello Friends thank you for your replies and words of encouragement.  I haven't reasearched the fatigue programme, I'll take a look at it.

I've just returned from a short walk, and I'm perishing cold. I can only do short walks anyway. I left home just before 2pm, and we have lovely sunshine, it looks nice - but as far as I'm concerned, the wind chill is horrible! I completed my walk, don't worry. It's colder now that it was at 8.30pm last night!!! And I put 4 layers on. So I'm still waiting for summer.

I don't think I could put up with 51C like India ( poor souls ), but I think Majorca would be nice, although I'm not prepared to travel yet. My treatment only finished 2 months ago.

 

 

Frank.

 

 

 
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